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Intersection of Disability & Race Explored at Free, DEI Virtual Conference: Civil Rights Advocate Kimberlé W. Crenshaw & Disability Activists to Present

BROOKVILLE, N.Y. – As issues at the intersection of disability and race remain under-recognized due to a lack fluency or awareness, nonprofit agencies AHRC Nassau and The Arc of the United States are responding with a free, online conference on Wednesday, May 18, 2022 to connect attendees of all abilities and backgrounds with research, best practices, and most importantly, with each other.

The Diversity, Equity & Inclusion (DEI) Virtual Conference, “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities,” will explore the history, the latest research, and opportunities for the increased inclusion of people with intellectual and developmental disabilities (IDD) as well as recognition for direct care staff, who are primarily Black, Indigenous, and people of color (BIPOC).

“Disability is an underdeveloped area of DEI. For those with no prior connection to the experience of disability or the underlying issues related to race, there can be shame and hesitation in trying to discuss these issues—or worse, silence,” said Stanfort J. Perry, Conference Chair and CEO of AHRC Nassau. “The purpose of this online conference is to create a platform offering the latest insight on the intersectionality of issues pertaining to ableism and racism—to encourage questions, conversations, and above all, shine a spotlight on those whom society has marginalized.”

More than 30 years since the passage of the Americans with Disabilities Act, people with disabilities remain one of the most marginalized groups – at high risk of violent crimes to contracting and dying from COVID-19. Their essential support staff, who make tasks of daily living and participation in the wider community possible, are predominantly women of color who have spent years advocating for a living wage. According to a report from the University of Minnesota – Institute on Community Integration and The National Alliance for Direct Support Professionals, “Black/African American Direct Support Professionals (DSPs) were paid less per hour than white DSPs, and a higher percentage of Black/African American DSPs worked 40 or more additional hours per week.”

Though there is overwhelming need, an overall lack of funding has resulted in a 43% national turnover rate in the direct care workforce and a staffing crisis. Self-advocates, like Jessica Campbell, have advocated for years for necessary funding to ensure services and supports to lead an independent life. “Imagine not being able to get medication, access money, stay clean, cook, do your job, or go out into the community—that’s what a staffing crisis means to us,” said Campbell, who is currently a member of AHRC Nassau’s Board of Directors and a Field Assistant for the Long Island Region at the Self-Advocacy Association of New York State.

The upcoming DEI Virtual Conference is important to Campbell because in addition to addressing some of these issues during a conference panel, she hopes “more people have a chance to be understood and that more people can begin to understand the experience of disability.”

For Peter Berns, CEO of The Arc of the United States, “Disability providers, at the state and federal level, are working within legal, legislative, and service frameworks that can be complex and difficult to navigate regardless of whether you receive services, work in the industry, or seek to understand as an outside observer.

“Within these systems, people with disabilities and their direct care staff can become further and further removed from the action of daily life, and lead lives in parallel to their peers without disabilities—with few interactions, largely unseen and unheard,” said Berns. “The DEI Virtual Conference speaker lineup will offer valuable perspectives on how meaningful change must be the result of collective partnership and advocacy across all facets of society.”

Conference keynote and civil rights advocate Dr. Kimberlé W. Crenshaw will provide insight into the “intersectionality” framework—a concept she pioneered—addressing how overlapping identities, such as disability, gender identity, and race, can lead to complex, and sometimes under-recognized, issues of inequity and inequality.  Dr. Crenshaw currently serves as the Isidor and Seville Sulzbacher Professor of Law at Columbia Law School, as well as a Distinguished Professor of Law at the University of California, Los Angeles.

Examining the existing support systems and how to reach a more inclusive future is the focus of the plenary session lineup. Plenary Speaker Kerri E. Neifeld, Commissioner of the Office for People With Developmental Disabilities (OPWDD) in New York State, will present how her office is working to stabilize, professionalize, and strengthen the direct support workforce following the pandemic, while also advancing diversity, equity and inclusion in the developmental disabilities field.

Plenary Speaker Tawara Goode, Associate Professor and Director, Georgetown University National Center for Cultural Competence, will evaluate cultural and linguistic competence in the industry’s collective efforts to advance DEI, and more specifically, what it means to achieve outcomes in the IDD space, while Plenary Speaker Atif Choudhury, CEO of the UK-based company, Diversity & Ability, will share insights from his lived experience and career on topics ranging from how to evaluate an organization’s progress toward a fully inclusive culture to proactive acknowledgments of intersectionality.

“The quality of insight and dedication to advancing social justice outcomes at this conference is exceptional,” said Perry. “With more than 30 sessions, including speakers from a variety of professional disciplines and backgrounds, we are anticipating a day of learning and connection that advances a more inclusive and equitable future for all. That’s why the conference recordings and an event toolkit will be freely available for a year following the event. This event is intended to serve as a resource, informing and empowering more organizations and individuals.”

The DEI Virtual Conference “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities” will be held on Wednesday, May 18 from 8:30 a.m. – 6 p.m. ET at ahrc.org/deiconference. The event is free and open to all. Closed captioning will be available for all sessions; American Sign Language is available for plenary and select sessions.

FREE NASW Continuing Education Credits Available NASW-NYS is recognized by the New York State Education Department’s State Board for Mental Health Practitioners as an approved provider of continuing education for licensed social workers (Provider ID #0014), licensed mental health counselors (Provider ID #MHC-0053), and licensed marriage and family therapists (Provider ID #MFT-0037), and licensed psychologists (Provider ID #PSY-0088)

About Us
AHRC Nassau, a chapter of The Arc New York, is one of the largest agencies in New York State supporting people with intellectual and developmental disabilities (IDD). Based in Nassau County, the nonprofit empowers people to lead fulfilling lives, together with family, friends and community. AHRC’s programs include a wide array of supports for people with disabilities and their families, including vocational and employment services, adult day habilitation and community-based services, guardianship, family support services and respite/ recreation opportunities, as well as residential services. AHRC Nassau is part of an elite group of international agencies accredited by CQL | The Council on Quality and Leadership for Person-Centered Excellence Accreditation With Distinction. AHRC is also one of four agencies accredited by New York State’s Office for People With Developmental Disabilities as a Compass agency, which is the highest level of accreditation offered. For more information, visit www.ahrc.org.

The Arc of the United States advocates with and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. For more information, visit thearc.org.

For more information, please contact Nicole Zerillo, assistant director of Community Resources, AHRC Nassau, at 516.626.1075, ext. 1134, or nzerillo@ahrc.org.

SOURCE AHRC Nassau

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A teenage girl with Down syndrome standing in a yard in front of a white fence with an older family member. The woman is laughing, with her hands on her granddaughter's shoulders. They are both looking at the camera.

Thank You, Moms!

Mother’s Day is a time to celebrate mothers and the mother figures who strengthen and support us in our lives. We want to recognize and honor the fierce mom advocates who have shared their stories and struggles, and the strength to fight for families nationwide.

This past year, moms nationwide raised their voices for a historic investment in Medicaid home and community-based services (HCBS) so that everyone can get the support they need to live in their community.

Andrea from Virginia, Julie from Texas, and their families shared their struggles as they wait for nearly a decade for HCBS that can help their children get the critical care they need at home. While family time comes with much joy and love, Julie knows that “[she’s] not going to live long enough to be her [child’s] direct caregiver forever.”

In October 2021, Pennsylvania disabled mom and activist, Latoya, came to Washington, D.C., to a storytelling vigil at the U.S. Capitol to share why HCBS matters to her and her family.

I came here today because I am literally fighting for my life and freedom…. Home and community-based services and accessible housing keep me from being stuck in an institution to get my needs met-something nobody of any age wants. I want Congress to understand that their political games are putting my life and my freedom at risk, and to stop the posturing and realize what your inaction is doing to real people.

Virginia mom and sibling, Laurie, shared her and her sister Amy’s story of transitioning from an institution to receiving HCBS in a group home and how this change helped her sister grow, even though it was a scary change for their family.

California mom, Amparo, was concerned that her son Jesus and other Latino families might struggle to access disability supports and services like HCBS. From this concern, Amparo joined forces with mothers in her state to launch a local chapter of The Arc, Madres Unidas Para Una Mendota Con Igualdad of The Arc. This chapter is dedicated to fearlessly confronting disparities and racism and ensuring all people can access disability services.

On March 30th, New York mom, Laura, spoke about her family’s need for HCBS at a rally at the U.S. Capitol and entreated Congress to act urgently and boldly to support people with disabilities and their families.

The rippling effects of our crumbling care system impact everyone. We have a crisis in this country as the salaries of direct support professionals do not match the important work they do…. We need a well-trained and stable workforce for continuity and quality of care! Building bridges to caregiving leads to the building of bridges in all our lives.

And this past week, moms Dena, Faye, Nancy, and Soojung shared on our Facebook page why HCBS are essential to their families and why services must be preserved and expanded.

Moms nationwide have also fought for other significant changes to protect and support their families and others.

In Iowa, moms Charmain, Heather, Erin, and Nancy all advocated to challenge laws that would ban schools from requiring masks. Because their children experience disabilities and underlying health conditions that would make them particularly susceptible to severe illness or death from COVID-19, they argued that this ban would effectively exclude their children from public schools and deny them equal access to education.

Mom and advocate, Micki, shared her family’s experience with Social Security’s complex rules around benefits – and how earning around $300 too much 14-15 years ago nearly disqualified her son from receiving future benefits that would help him live independently in the community.

And last but certainly not least, Debbi and Kerri both detailed the impact that not being able to access paid leave had on their family. Debbi often worked through the night to meet her deadlines and keep hold of their health insurance that kept her child alive. Kerri and her family were forced to rely on a GoFundMe campaign to pay for their mortgage, utilities, and essentials so they would not lose their home.

THANK YOU to these moms and to all our moms and mother figures in our lives who strengthen us, support us, and work tirelessly to make lives better – not just for their families, but for everyone.

A row of $20 bills

The Arc Supports Bill to Allow People With Disabilities to Earn and Save More Money

Washington, D.C. – The Arc supports a bipartisan bill introduced in Congress to finally give people with disabilities and older Americans significantly more freedom to earn and save money without risking the loss of vital benefits, their livelihoods, and their ability to support themselves and members of their family. The SSI Savings Penalty Elimination Act, introduced by U.S. Senators Sherrod Brown and Rob Portman on Tuesday, updates Supplemental Security Income (SSI) asset limits for the first time since the 1980s. Current SSI asset limits prevent individuals who receive the modest benefit from saving more than $2,000.

The bill raises SSI asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples and indexes them to inflation moving forward. SSI provides money to 8 million adults and children with disabilities and older Americans. Many recipients are Black, Hispanic, and other people of color and further marginalized – making it even more critical that Congress pass this bill.

“The SSI Savings Penalty Elimination Act is a positive step forward in The Arc’s ongoing push to give millions of people with disabilities the economic opportunity they deserve and more financial security to save for emergencies and unexpected expenses. We see too many people with disabilities and their families forced to impoverish themselves in order to maintain critical SSI benefits, instead of being able to save for the future and for emergencies that arise in all of our lives,” said Peter Berns, CEO of The Arc of the United States. “Raising asset limits would significantly improve the lives of people with IDD who receive SSI.”

For many years, The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. Along with advocates, we have continuously urged Members of Congress to update SSI asset limits to at least adjust for inflation, so that people with disabilities can take advantage of financial opportunity to provide for themselves and their families and feel a better sense of financial security.

The Arc sent a letter to Senators Brown and Portman in support of the bill. Read it here.

A volunteer in a tie dye shirt holds a paper bag of food donations

That’s Amore: Volunteers With Disabilities Address Food Insecurity Through Pasta Kits

In honor of National Volunteer Month, The Arc is highlighting the efforts of volunteers with disabilities. While these individuals are serving their neighbors, they are also a living example of the tremendous value they bring to their communities.

A volunteer in a wheelchairs sits at a table. He is working on meal kit assembly, with various items strewn across the table, wile other volunteers stand nearby helping.

The staff and clients at AHRC Nassau know the value of a home cooked meal – and the comfort and joy it brings to a family. For their 2022 MLK Day of Service event, they wanted to extend that joy while offering tangible food assistance to their community in

Brookville, New York. They decided to create, pack, and deliver pasta meal kits to their neighbors experiencing food insecurity. Volunteers were empowered by learning what ingredients and steps were needed to cook a delicious meal. They also helped to show that people with disabilities are not always the ones in need of service and can give back to their communities as well.

Twenty volunteers with disabilities directed each phase of the process, from finding all the ingredients to setting up the event in January. Some of AHRC Nassau’s clients created hand-written cards celebrating the spirit of the initiative. Others designed artwork, each piece inscribed with a quote from Dr. Martin Luther King Jr.: “Only in the darkness can you see the stars.” These items were placed in the meal kits alongside the ingredients.

A woman with red dyed hair in a black sweatshirt stands, smiling and holding a package of food, in the grocery store.As the big day arrived, volunteers with disabilities again led the way, including Nijah, who oversaw setup. Others prepared the boxes, packed the meal kits, and completed quality inspection. Once all boxes were packed and ready for distribution, the group delivered 100 meal kits to Island Harvest, Long Island’s food bank. In total, 400 individuals were served that day.

Long Islanders facing hunger weren’t the only beneficiaries of the day. Each volunteer shared a collective sense of accomplishment in combatting food insecurity in their backyard. More importantly, the volunteers with disabilities felt pride that they have demonstrated that everyone plays a critical role in making their community more equitable for all—showing the true meaning of the quote from King that “Everybody can be great…because anybody can serve.”

Want to learn how to engage volunteers with disabilities? The Arc’s tip sheet Planning for Including People with Intellectual Disabilities in Volunteer Programs can help your organization get started.

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The Arc Reacts to Supreme Court Ruling Weakening Remedies Available to People With Disabilities Experiencing Discrimination

Washington, D.C. – Yesterday, in Cummings v. Premier Rehab Keller, P.L.L.C., the U.S. Supreme Court held that damages for emotional distress are not recoverable in lawsuits alleging violations of two federal civil rights statutes covering people with disabilities—Section 504 of the Rehabilitation Act of 1973 (Section 504) and the Affordable Care Act (ACA). This decision will harm people with disabilities who experience mental distress and emotional injury resulting from discrimination in all aspects of public life, including medical offices, schools, workplaces, state and local government programs, and other settings.

The plaintiff in this case, Jane Cummings, is deaf and legally blind. She sought physical therapy services from Premier Rehab Keller (PRK) and asked PRK to provide an American Sign Language (ASL) interpreter at her therapy sessions. PRK refused and told Ms. Cummings that she could instead communicate with the therapist using written notes, lip reading, or gesturing. Ms. Cummings sued, alleging that PRK’s failure to provide an ASL interpreter constituted disability discrimination under Section 504 and the ACA and so she sought damages and other relief.

In partnership with other disability rights organizations, The Arc explained in an amicus brief to the U.S. Supreme Court that without the availability of emotional distress damages, some individuals with disabilities who have been discriminated against on the basis of their disability in violation of federal law will have no relief. As the amicus brief stated: “Often, violations of the relevant statutes do not cost individuals with disabilities money, nor do they impose physical harm. Instead, they are humiliated, singled out, mocked, or made to go without regular access to the service to which they are entitled….Such core harms to human dignity are the very injuries that the Rehabilitation Act, Title VI, Title IX, and the Affordable Care Act are meant to prohibit.” The amicus brief also explained that the standards for proving the level of emotional harm that justifies a damages award are already rigorous and courts carefully analyze awards for adherence to the law and evidence.

“This ruling deprives people with disabilities of justice. These civil rights statutes are intended to protect the rights of people with disabilities and other historically disenfranchised groups. In foreclosing relief for the emotional distress that may ensue from discrimination, this holding diminishes the dignity and respect that people with disabilities deserve and are entitled to as full members of our society. We are very disappointed in this ruling,” said Peter Berns, CEO, The Arc.

Justice Stephen Breyer wrote in dissent that people who suffer discrimination often feel humiliation or embarrassment and that damages for emotional suffering have long been available as remedies in cases alleging discrimination:

It is difficult to square the Court’s holding with the basic purposes that antidiscrimination laws seek to serve. One such purpose…is to vindicate “human dignity and not mere economics.” But the Court’s decision today allows victims of discrimination to recover damages only if they can prove that they have suffered economic harm, even though the primary harm inflicted by discrimination is rarely economic. Indeed, victims of intentional discrimination may sometimes suffer profound emotional injury without any attendant pecuniary harms. The Court’s decision today will leave those victims with no remedy at all.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

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Proposed Changes to Affordable Care Act and Executive Order Would Open Up Coverage to Millions of Families

WASHINGTON, D.C. – The Arc is pleased that President Biden signed an executive order this week to strengthen the Affordable Care Act (ACA), a lifeline for people with disabilities. The changes could make health insurance more affordable to millions of Americans with disabilities and low-income Americans.

President Biden, joined by former President Obama, announced that the Administration is proposing a rule change to the ACA to close what is known as the “family glitch.” The “family glitch” leaves some families stuck with unaffordable coverage because it excludes many families from using the premium tax credit to purchase affordable health insurance on the ACA marketplaces. These families, including those who have disabilities or have family members with disabilities, face totally unaffordable premiums.

“For people with intellectual and developmental disabilities (IDD), access to health care can be a matter of life or death. It is uniquely difficult for people with IDD to obtain affordable and adequate health insurance coverage despite depending on health care services more than those without disabilities,” said Marty Ford, Senior Advisor at The Arc, who was invited to and attended the White House announcement.

The ACA is critical to the lives of people with disabilities, their families, and the direct support workforce who rely on the ACA for access to health coverage for preventative care, to maintain good health, and secure vital medical treatment. The importance of the ACA is underscored by the pandemic. The public health crisis is a glaring reminder of the inequities in health care and discrimination faced by people with disabilities, other groups that are marginalized, and people holding multiple marginalized identities.

We also support other elements of President Bident’s new executive order directing federal agencies to continue to find ways to make coverage under the ACA, Medicaid, and Medicare easier to enroll in and strengthen the benefits available.

The Arc and our allies have fought relentlessly to defend the ACA to preserve this lifeline for people with disabilities. In 2020, The Arc, with a coalition of disability and civil rights organizations, joined an amicus brief filed in the U.S. Supreme Court urging the court to uphold the ACA in its entirety. The Arc also provided an amicus brief in support of upholding the law before the Fifth Circuit Court of Appeals in 2019.

A large group of people in front of the Capitol. Some are using wheelchairs, some are kneeling and some are standing. Some of them are holding signs that say "Disability rights are human rights".

Care in Crisis: Disability Rights Advocates Rally at U.S. Capitol to Demand Care Investment

WASHINGTON, DC – Today, disability rights advocates rallied in front of the U.S. Capitol to send an important message: disability rights are human rights, and those rights include the right to live in the community, work, and have relationships. A recording of the rally can be viewed here.

People with intellectual and developmental disabilities (IDD), parents, direct support professionals, other leadership from The Arc, and partnering disability organizations delivered this message at a critical point as Congress continues to work on a bill to invest in care. Hundreds of advocates showed the strength of the disability community and the growing movement, and were joined by U.S. Representative Ayanna Pressley (MA-7) and U.S. Senator Sherrod Brown (OH), who also both delivered remarks in support of disability rights.

We called on Congress to invest now in home and community-based services (HCBS) so that people with IDD can live at home in their own communities with the supports they need. More than 800,000 people are stuck on wait lists for services to help them live their daily lives. More funding can also mean living wages for direct care workers. We also called on Congress to finally update the Supplemental Security Income (SSI) program that allows many people with disabilities to access HCBS.

Rally participants traveled from across the country for this urgent advocacy moment.

Ric Nelson came from Alaska, where he is Advocacy and Outreach Manager at The Arc of Anchorage. He told the crowd the time is now for Congress to take action.

“We need to tell Congress about home and community-based services. It’s not an option, it’s a right. It’s a right for us to live in our communities! And work! And have relationships!” said Nelson. “It’s a right for us to have the same freedoms as everybody else. We have that right and we demand that right.”

HCBS allows people with IDD to live at home in their own communities with the supports they need. People with disabilities rely on HCBS for everyday things like employment supports, getting around in the community, dressing, bathing, meal preparation, taking medication, and more. But there isn’t enough money in the HCBS program to support everyone and pay a fair wage.

People with disabilities also rely on the SSI program to access HCBS. Many of the rules of the SSI program were last updated in 1972, so today, the program penalizes people with disabilities who marry and prevents people with disabilities on SSI from saving money via outdated asset limits. These rules desperately need to be updated.

The direct care workers who provide HCBS are underpaid, which leads to high turnover, critical staffing shortages, and compromised care for many people with disabilities. All too often, this means unpaid family caregivers are filling in the gaps of care.

Aryana Ingram, a direct support professional with RCM of Washington and certified caregiver with Home Helpers of Bowie, Maryland, spoke about her passion for caring for others and the need for fair pay. Ingram’s client William is the chief receptionist for The Arc of the United States.

“We need to invest more in caregiving. I work two jobs, working 6, sometimes 7 days a week to make ends meet. In order to live comfortably, that’s what I must do. I’m thankful for what I do have, but it would be greatly appreciated to receive what I deserve and need,” said Ingram. “We need our government to respect and invest in our needs right here, for our fellow caregivers who do so much because we love and respect our fellow people.”

“The lives of people with disabilities have value. We need Congress to recognize their value by investing in home and community-based services,” said Peter Berns, Chief Executive Officer of The Arc of the U.S. “We need Congress to end the waiting lists for home and community-based services. And we need Congress to raise the asset and income limits so that people with disabilities don’t have to live in poverty in order to get the help that they need.”

Kevin Wright with the DC Developmental Disabilities Council closed out the rally, stating “I always say that everyone has the same rights as others … to get the supports you need. Congress should just wake up and listen to these kind of things.”

Today’s care rally marks the end of this week’s annual Disability Policy Seminar, hosted by The Arc of the U.S., the American Association on Intellectual and Developmental Disabilities (AAIDD), the Autism Society, the Association of University Centers on Disabilities (AUCD), the National Association of Councils on Developmental Disabilities (NACDD), Self-Advocates Becoming Empowered, and United Cerebral Palsy (UCP).

Small orange icons of people arranged to form a map of the United States

Making it Personal: Continuing the Fight for Home and Community-Based Services

For decades, people with disabilities have expressed their undeniable preference to live among family and friends in their own community. Just ask Kayte: “I [want to] tell Congress how much I want to live out in the community one day and how I need HCBS (home and community-based services) to do so.”

HCBS support people with disabilities by giving them the tools to independently engage in everyday activities such as working at a job in the community, making food and eating, managing money and medications, bathing and dressing, and more. Unfortunately, for Kayte and many others, life in the community remains a dream. Currently, 800,000 people with disabilities remain on waitlists, with no access to these services due to insufficient funding and direct support worker shortages.

A photo collage using 6 polaroid-looking frames with various people in them.

The Arc and our network of people with disabilities, family members, and allies have continued to relentlessly push for additional funding to address this crisis. But it’s the stories from the people who rely on these invaluable services themselves who make the most compelling case for why we must invest in them.

“Thanks to my HCBS waiver I can be a part of my community, safely be transported to and from work, participate in activities in the community/with my friends, practice meal prep and cleaning etc. I have autism and my waiver has covered sensory equipment to help meet my sensory needs.” – Chloe

“I only receive in home supports, supports to help me with day to day things, help making sure food is still good, not spoiled, and help with cooking….I have choice in who my staff is — it’s all family. These items listed allow me to remain in the home, and be very independent. I cook my own meals, wash my own laundry, do my own grocery shopping.” – Kayte

“My supportive employment helps me keep a job in the community and provide support when needed. Because of supportive employment I am able to work as a peer support specialist at my local [chapter of The] Arc and also volunteer at American Red Cross. Without all these services I wouldn’t have the necessary supports in order to do things independently. The importance of HCBS Services is very critical to many people with disabilities. If you make cuts to these services or limit the services, it puts a barrier on the person with a disability as well as the person providing service(s). These services help me in my life and my life would look different without these services.” – Joe

“I have 10 1/2 hours, seven days a week [for HCBS] and can only hire [four] people. Another thing is that CMS (Centers for Medicare & Medicaid Services) needs to pay more for its workers—the reimbursement rate is not enough for us to compete with any other easy job out there. I am 38 and without HCBS services I would be forced into the nursing home and lose everything I’ve worked my whole life for and my precious little dog who is my life.” – Jen

“COVID-19 has exacerbated systems such as Personal Care Attendant services that were already broken. A Medicaid Consumer Directed Attendant’s paycheck has never been close to a living wage pay rate. What that translated to during COVID-19 is I could not find attendants to assist me with activities of daily living in my home. Inequitable attendant pay rates created a barrier to me to access Home and Community Based Services (HCBS).” – Ivy

While negotiations for HCBS legislation continue, there remains strong commitment for the cause in Congress. Now is not the time to back down. We must continue to educate about the importance of HCBS for people with disabilities and their families so that we can secure the funding we desperately need.

Every story matters. Share yours now with The Arc’s action alert!

 

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The Arc Unifies With People With Disabilities in Ukraine

Washington, D.C. – The Arc is closely watching the horror unfold in Ukraine and thinking of the millions of adults and children with disabilities who are in harm’s way. It’s estimated that 2.7 million people with disabilities live in Ukraine, including thousands living in institutions. According to news reports, a care facility for people with disabilities was bombed, leaving residents without heat, water, and electricity. We know that food shortages are happening and many people with disabilities are cut off from medications and support services.

According to AccessAbility, 82,000 Ukranian children with disabilities are segregated in institutions and are at risk of abandonment. And the organization says only 4% of Ukraine’s infrastructure is accessible to people with disabilities. Ukraine is using underground subways as bomb shelters. However, according to Accessibility, “the vast inaccessibility of the country’s infrastructure means disabled people are not being give safety in their bomb shelters.”

We support Disability Rights International (DRI) in their calls for urgent action to protect people with disabilities and children in Ukraine’s orphanages. We fully back DRI in urging immediate attention to “protect people with disabilities in Ukraine and ensure their full inclusion in international relief efforts.”

We share DRI’s concern for adults with disabilities living in institutions in Ukraine. We fear they could be left behind as people in Ukraine escape the violence. We also fear that people with disabilities will be abandoned in all the chaos.

The Arc also supports the calls of The European Disability Forum (EDF). EDF is calling for the protection and safety of people with disabilities in Ukraine by respecting:

  • Their obligations under the United Nations Convention on the Rights of Persons with Disabilities
  • The U.N. Security Council Resolution 2475 on Protection of Persons with Disabilities in Conflict
  • International Humanitarian Law and the Humanitarian Principles

“Hour by hour, Ukrainians are fighting to survive, and for those with disabilities and their families, there are far too few options to ensure their health and safety in this attack. Their rights must be honored in the crisis response, in immigration policy and procedures, and in the days and weeks ahead as this nation fights for its future,” said Peter Berns, CEO, The Arc.

The Arc has a longstanding commitment to the human and civil rights of people with intellectual and developmental disabilities (IDD). Given that all people with IDD are complex human beings with varying attributes and living circumstances, and many experience multiple risk factors for human and civil rights violations, we emphasize that all are entitled to human and civil rights regardless of age, gender, race/ethnicity, sexual orientation, cultural, linguistic, geographic, and spiritual diversity, economic status, severity of disability, intensity of needed supports, or other factors that expose them to increased risk of rights violations.

These rights include the rights to autonomy, dignity, family, justice, life, liberty, equality, self-determination, community participation, property, health, well-being, access to voting, and equality of opportunity and others recognized by law or international declarations, conventions, or standards. All people with IDD must have the right to supports they need to exercise and ensure their human and civil rights. Local, state, federal, and international governments must strongly enforce all human and civil rights.

With your support, The Arc is responding to the crisis in Europe caused by the Russian invasion of Ukraine. Give today, and The Arc will grant 100% of the resources to organizations supporting people with intellectual and developmental disabilities on the ground in Europe who were affected by the war.

The invasion of Ukraine also reminds us that we, as a society, need to increase our awareness of the unrest and conflict tearing apart lives in many countries across the globe. While much of the media and our attention is focused on the people of Ukraine right now, let us also remember the vast numbers of lives lost and threatened daily on an international scale. In all of these regions, we support the human and civil rights of people with disabilities and call for careful consideration of their safety and access to escape war and violence.

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A Review of Judge Ketanji Brown Jackson’s Disability and Civil Rights Record

On February 25, President Biden nominated Judge Ketanji Brown Jackson for Associate Justice of the United States Supreme Court to fill the upcoming vacancy due to the retirement of Justice Stephen Breyer. This is the first-ever nomination of a Black woman to the Supreme Court as well as the first-ever former public defender. Judge Jackson currently sits as a circuit judge on the United States Court of Appeals for the District of Columbia Circuit and has previously served as a clerk for Supreme Court Justice Stephen Breyer, a public defender, a Commissioner on the U.S. Sentencing Commission, and as a judge for the U.S. District Court for the District of Columbia. Judge Jackson has received Columbia Law School’s Empowering Women of Color Constance Baker Motley Award. Judge Jackson’s confirmation hearing before the Senate Judiciary Committee begins on March 21.

Each nomination to the Supreme Court is incredibly significant. The Arc reviews the record of Supreme Court nominees to determine whether prospective members of the Court demonstrate a strong commitment to advancing disability civil rights and ensuring equal application of the law. The purpose of The Arc’s review is to educate the public about a given nominee’s record in order to contribute to greater understanding of the nominee with regards to the issues of greatest relevance to people with intellectual and developmental disabilities (IDD) and their families and supporters.

Judge Jackson has authored nearly 600 opinions since being appointed a judge in 2011. Here, we highlight some areas of her jurisprudence particularly relevant to people with disabilities.

EDUCATION

The Arc’s position statement on Education states: “All children with IDD must receive a free appropriate public education that includes fair evaluation, ambitious goals, challenging objectives, the right to progress, individualized supports and services, high quality instruction, and access to the general education curriculum in age-appropriate inclusive settings.”

In her opinions related to the education of students with disabilities, Judge Jackson has generally demonstrated an appreciation for the obligations of school districts to provide the supports students with disabilities—including those with the most significant disabilities—need to thrive. For example, Judge Jackson has held that public schools must ensure a private placement for a student with a disability can “adequately address” the student’s needs and provide the level of supports required for the student to receive a free appropriate public education (required by the Individuals with Disabilities Education Act) before making the placement.1 Judge Jackson has also rejected a school district’s argument that serving a student with intellectual disability and significant disability-related behaviors was “impossible” or that the student’s behavior excused the district from placing him in a program that could meet his needs and held that the school district violated the IDEA by failing to provide plaintiff an education following his expulsion.2

CRIMINAL JUSTICE

The Arc’s position statement on Criminal Justice states: “People with IDD have the right to justice and fair treatment in all areas of the criminal justice system, and must be afforded the supports and accommodations required to make justice and fair treatment a reality.”

Judge Jackson has generally shown a respect for the dignity of incarcerated people and upheld their rights to receive accommodations and fair treatment while entangled in the criminal justice system. For example, Judge Jackson has held that a jail violated the rights of a deaf inmate under federal disability rights laws when jail officials did nothing to assess the inmate’s need for reasonable modifications despite their knowledge of his disability and failed to provide him with a sign language interpreter, forcing him to communicate only through lip reading and written notes and sending him to solitary confinement.3 In her opinion, Judge Jackson wrote that although “[i]ncarceration inherently involves the relinquishment of many privileges,” incarcerated people retain important rights, “including protections against disability discrimination.”

Judge Jackson has granted a number of compassionate releases during the pandemic, including of prisoners with mental and physical disabilities.4 Judge Jackson has spoken out about the need for a robust public defense system in order to “protect the rights of the accused.”5 Judge Jackson has also expressed concern about the ability of people facing the death penalty to receive adequate opportunity to assert their innocence if new evidence emerges post-conviction.6 Such post-conviction evidence can also be critical in cases involving the death penalty and intellectual disability. The U.S. Supreme Court has held that the Eighth Amendment of the U.S. Constitution prohibits the execution of people with intellectual disability as cruel and unusual punishment and has mandated that states cannot ignore clinical science or impose procedures that create an “unacceptable level of risk” that people with intellectual disability will be executed.7 But proving that an individual has intellectual disability in the death penalty context involves a fact-intensive, comprehensive review of records since childhood as well as expert testimony and all too many individuals who likely have intellectual disability are initially represented by counsel unfamiliar with this area of law and are precluded from presenting relevant evidence to the court later on in the process because of procedural hurdles, resulting in miscarriages of justice for these defendants.

Prior to becoming a judge, Judge Jackson represented criminal defendants with mental health disabilities, including those with co-occurring intellectual or developmental disabilities and, thus, has a keen awareness of the barriers such individuals can face in accessing justice.8

EMPLOYMENT

The Arc’s position statement on Employment states: “People with IDD can be employed in the community alongside people without disabilities and earn competitive wages. They should be supported to make informed choices about their work and careers and have the resources to seek, obtain, and be successful in community employment.”

Judge Jackson has generally demonstrated an appreciation for plaintiffs’ allegations in employment discrimination actions and has held that federal disability rights laws require employers to engage in a meaningful, interactive process with employees with disabilities to ensure the employees have the reasonable accommodations they need to perform their jobs.9 For example, Judge Jackson has held that employers must consider job reassignments for qualified employees with disabilities as reasonable accommodations where other accommodations have proved ineffective. Judge Jackson has also repeatedly emphasized the importance of allowing discovery to proceed to ensure that plaintiffs challenging workplace discrimination have a fair opportunity to present their case.10 Judge Jackson has also demonstrated a commitment to ensuring that pro se plaintiffs—plaintiffs who represent themselves—are able to meaningfully assert their rights in court, ensuring access to justice for those without legal representation who may have misunderstood legal processes and procedures, including for disability-related reasons, among others.11

At times, Judge Jackson has imposed a relatively high bar for proving employment discrimination and has, at times, read procedural requirements in restrictive ways that limit the avenues for relief for employees alleging discrimination.12

CIVIL RIGHTS

The Arc’s position statement on Human and Civil Rights states: “The human and civil rights of all people with IDD must be honored, protected, communicated, enforced and thus be central to all advocacy on their behalf.”

Judge Jackson has generally demonstrated an understanding of the robust protections provided by federal and disability civil rights laws. For example, in a case alleging that Uber discriminated against wheelchair users, Judge Jackson held that people with disabilities do not need to engage in the “futile gesture” of making themselves subject to Uber’s discriminatory policies in order to have standing to sue the company.13 This principle also applies in other contexts under federal disability rights laws and allows, for example, people with IDD who are at serious risk of institutionalization to challenge government policies that deny them community-based services and supports even if they have not yet been institutionalized. Judge Jackson also held that Uber is a public transportation company—not a technology company—and is subject to liability under the Americans with Disabilities Act, ensuring that the rights of people with disabilities are protected in a rapidly changing transportation industry.

Judge Jackson has also participated in a decision upholding President Biden’s eviction moratorium designed to keep renters in their homes during the COVID-19 pandemic, demonstrating a concern for the rights of the most vulnerable residents, which includes renters with disabilities who face a disproportionately severe risk of experiencing homelessness and complications from COVID-19.14

With over a decade on the federal bench, Judge Jackson has extensive relevant experience to serve as a Supreme Court justice. In her nearly 600 opinions on a wide variety of topics, Judge Jackson has demonstrated an understanding and appreciation of the robust protections provided by federal disability and civil rights laws. In disability and other civil rights cases, Judge Jackson has shown a willingness to hear claims from injured plaintiffs, a commitment to avoiding imposing unfair burdens on plaintiffs, and has acknowledged the hardships that drove plaintiffs to seek relief. Her unique background as a public defender prior to becoming a judge and her overall judicial record indicates that she is committed to a generally robust interpretation of disability and civil rights laws, fundamental fairness for all, and ensuring that plaintiffs receive their day in court. Judge Jackson’s historic nomination is important to The Arc as we are committed to access, equity, and inclusion in all we do, and our diverse and growing disability rights movement expects the institutions that uphold our democracy to reflect the full diversity of our country.

The Arc is grateful for a number of groups for publishing their research regarding Judge Jackson’s disability and civil rights record which this statement draws from. For a more thorough review of Judge Jackson’s record on a variety of topics, please see reports from the Bazelon Center for Mental Health Law, NAACP LDF, and the Alliance for Justice.

 

1 W.S. v. District of Columbia, 502 F. Supp. 3d 102 (D.D.C. 2020).

2 Schiff v. District of Columbia, Civil Action No. 18-cv-1382 (KBJ), 2019 U.S. Dist. LEXIS 189606 (D.D.C. Nov. 1, 2019).

3 Pierce v. District of Columbia, 128 F. Supp. 3d 250 (D.D.C. 2015)

4 See, e.g., United States v. Greene, No. 71-CR-1913 (KBJ), 516 F. Supp. 3d 1 (D.D.C. 2021); United States v. Dunlap, No. 17-CR-207 (KBJ), 485 F. Supp. 3d 129 (D.D.C. 2020); United States v. Johnson, No. 15-CR-125 (KBJ), 464 F. Supp. 3d 22 (D.D.C. 2020).

5 Ketanji Brown Jackson, “Responses to Questions for the Record from Senator Ben Sasse to Judge Ketanji Brown Jackson, Nominee to the United States Court of Appeals for the D.C. Circuit,” Senate Judiciary Committee (2022) at 465 (of PDF), available at https://www.judiciary.senate.gov/imo/media/doc/Jackson%20SJQ%20Attachments%20Final.pdf.

6 Ketanji Brown Jackson, “Supreme Court as Gatekeeper: Screening Petitions for ‘Original’ Writs of Habeas Corpus in the Wake of the A.E.D.P.A.” (November 2001), available at https://www.judiciary.senate.gov/imo/media/doc/Jackson%20SJQ%20Attachments%20Final.pdf (pp 1474-85).

7 See, e.g., Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and Moore v. Texas, 137 S. Ct. 1039 (2017).

8 See, e.g., United States v. Kosh, 184 Fed. Appx. 4 (D.C. Cir. 2006); United States v. Lowe, 186 Fed. Appx. 1 (D.C. Cir. 2006).

9 See, e.g., Von Drasek v. Burwell, 121 F. Supp. 3d 143 (D.D.C. 2015); Mitchell v. Pompeo, No. 1:15-cv-1849 (KBJ), 2019 U.S. Dist. LEXIS 54797 (D.D.C. Mar. 31, 2019).

10 See, e.g., Tyson v. Brennan, 306 F. Supp. 3d 365 (D.D.C. 2017); Ross v. United States Capitol Police, 6 195 F. Supp. 3d 180 (D.D.C. 2016).

11 See, e.g., Horsey v. United States Dep’t of State, 170 F. Supp. 3d 256 (D.D.C. 2016).

12 See, e.g., Alford v. Providence Hosp., 60 F. Supp. 3d 118 (D.D.C. 2014); Crawford v. Johnson, 166 F. Supp. 3d 1 (D.D.C. 2016).

13 Equal Rights Ctr. v. Uber Techs., Inc., 525 F. Supp. 3d 62 (D.D.C. 2021).

14 Alabama Ass’n of Realtors v. United States Dep’t of Health & Hum. Servs., No. 1:20-CV-03377- DLF, 2021 WL 3721431 at *1 (D.C. Cir. Aug. 20, 2021).